Jodie’s Journey

As I sat on my hospital bed and looked out over the city – my last week of whirlwind medical tests, scans and poking (by doctors), was fresh in my mind.  Tears rolled down my cheeks on a regular basis, my heart was heavy and I had no idea what the future may hold for me.  Only one week ago, I was in my full-time Aerospace job, a mother of 2 little girls and a devoted wife.  Now I was in hospital and dying inside.  What were the doctors not telling me?  I knew it was serious, but I knew very little about the disease that was trying to consume my body – it had managed to weave itself through the majority of my torso – eating into bone, nerves and muscle.  Why, at such a young age – and in the prime of my life @ 35 – did I have to face this horrible foe?

My consultants and my registrars consistently reminded me that my future was subject to my newly diagnosed disease.  But, my faith in God, reminded me that they were medical scientists, that didn’t subscribe to my faith and my belief that spontaneous remission is not only a medical term – but part of God’s promise to me, as part of my walk, as a believer in miracle and in the fact that sometimes medical science, does not have all the predictions correct.

I listened to music a lot to calm and inspire me, so my playlist was busy during my first 10 weeks in hospital – I choose to find music that gave me strength and resolve, as they epitomised all I believed about surviving, against almost unbeatable and insurmountable odds.   I played many songs and read many books, whilst lying on my hospital bed, looking out the window over our down-town city and even in the medical scanning machines, I frequently inhabited.

Often, the medical team played tunes, whilst I was being scanned, a MRI scan would take almost ½ hour with lots of banging and scanning noise constantly.  I must have had close to 20 scans or more – along this path.

One day, the technician asked me ‘Which radio station would you like to hear’ – my response was ‘Anything that inspired me’.  She laughed in response.  She turned it onto an AM easy-listening station – after 15 minutes: as I lay as still as a rock – one of my playlist ‘strength songs’ came on.  How did we time this?  A co-incidence?  Hardly.  God was always reminding me that my goal and my life’s drive now was to prove my doctor’s wrong and defeat this disease with all my might and to inspire others to do the same.

Day after day, I lay in hospital, trying to keep my chin up – each day was a new challenge and provided new clues and new answers – from doctors, counsellors, experts and my pastors.  Family and friends and co-workers would visit me – themselves floored by the fact that a seemingly young woman – who looked normal and un-sick – could actually be extremely ill and close to death.  My diagnosis was also delayed – big time.  I had visited 7 doctors and (we eventually) counted 21 separate medical visits to try and get help – but to no avail and often to the claim that I was a hypochondriac.

Not until after 11 months of desperate pain and illness, did I present to my hospital ER, pleading for help and someone who would listen to my concerns about my very strange symptoms.  It was only until after a CT scan was performed, a ‘white-faced’ senior consultant bravely came back to me with the news that they had found ‘something strange on my scan’ and I would need to stay in overnight or a few nights.  My brain was instantly in shock.

I was not only shocked at this, but I had a sense of relief that someone finally believed me.  I remember that night, as I was in my hospital gown, my husband was with me – sitting in an investigative ward, a young Asian doctor came to me to ‘tell me what they had found’.  She must have got the ‘short straw’ – as what she was about to tell me, would shatter my perfect life, my perfect existence with my husband and 2 kids.  She said ‘We have found a mass in your back – it is pressing into your spine and causing your sciatica symptoms, threatening your right leg function and we think it may be malignant.  We don’t know what it is or where it’s come from – it’s going to take some time before we know what you are fighting and what to do – so, you’re going to be here for a while’.

‘How long is a while?’ – I said to her ‘What about my job, my kids, and my house?’  Suddenly a thousand thoughts flooded my mind.  My perfect life was over in a flash.  I remember grabbing her shirt ‘Please tell those doctors, sitting over there (a group of them talked at a near-by nurses’ station) – I need them to work hard to save my life, I have 2 little girls that need me and a family’ tears flowing down my cheeks.  She assured me they would work hard.  This was a defining moment that I will never forget, from that moment onwards.

A few days later (after what seemed like 100 tests later) – I was then transferred to my home ward, Haematology – where my view changed, but my resolve and my drive to survive, did not.  My doctors were new, but every part of me and the disease I faced was better known to them and they were experts in what was trying to attack me.

One night, after a day of hard news and hard treatment – and on a day, I would rather have forgotten – as I looked out over the lights of the city – listening to those words: I saw a blue neon light on a hill – in the distance.  I couldn’t believe what I saw – It was a (brightly-lit) cross – it appeared to be on top of church steeple and was shining, in the dark night for me to see, as I listened to strength words in my headphones with the vision of what was in front of me – I had an inspirational boost, and a common understanding – that indeed, I was never alone, even on days when I felt that way.  I later found the church was one suburb away from the hospital, where I was admitted.  It belongs to a Spanish mission style church, called ‘Our Lady of Victories’ Catholic Church.  It is now a Polish congregation and its history, goes right back to 1914.

I continued to play my music, over & over whilst I was there – and would continue to fight the disease again, after relapsing many years later.  After that episode – I then thought I’d relapsed for a third time, but found it was a diagnosis of scaring to the S1 nerve root, from my initial and 2nd relapse.  This was due to nerve damage from tumours/radiotherapy in the area and a 5 year delayed scaring reaction from the radiotherapy that I needed to initially save my right leg.

We did save my leg and my life, twice – but the emergency radiotherapy I required to first save my leg from a delayed diagnosis and tumour impact, eventually took the leg – not completely, but partially.  I now use a lot of medication for pain, wear a brace and sometimes a walking cane helps.  However, I am more than happy to be alive.  Music has been one part of my rehabilitation, prayer, trusting God in all things – regardless of what I have endured.

Now, I am still in remission and happy to advocate for others – patients, health consumers, people in distress or facing difficulties, particularly women with illness and disability.  My passion is for women, like me – who must raise their kids, whilst they battle illness or a disadvantage.  With God’s strength, we can face all things and with amazing inspiration, from faith, music and friends – we can all find the strength to endure, survive and THRIVE!!  It’s imperative to keep going – even with a poor prognosis or a non-favourable outlook.

My story has gone all around the world and some of the most notable world royalty and government officials have read about my journey.  Your journey also, can be used to positively impact other people’s lives.

God’s outlook for us is always to bless us, love us, provide for us and heal us.

Take heart as you continue to read and be encouraged – you can survive – not matter what faces you, continually stand firm in your beliefs, love and care for brothers and sisters who have also suffered.  You can survive – I believe it.